Sunday, 5 July 2015

Kirsten: Right Where I Am 2015: 8 months 1 week

Our beautiful girl, Eilish died in September 2014, aged 9 months and 24 days. She seemed a healthy, normal baby at first and then struggled with severe reflux, struggled with feeding and putting on weight. At 5 months old she was diagnosed with an incurable enzyme deficiency called Krabbe Leukodystrophy. We were told on average babies with this genetic condition life for 13 months but most die before aged 2. We didn't even get 10 months with our darling girl.

Time is not healing. Time is making me miss Eilish more. My whole life since Eilish's diagnosis has been turned on its head. I no longer have the optimistic, everything will turn out fine attitude that I used to have because - well it didn't turn out alright, my little girl died. I am carrying a heavy weight around that I can never put down. It did seem to 'not get any heavier' for a few weeks but it's heavier again. It just seems like every day since the first anniversary of Eilish being admitted to hospital is ingrained in my head. I started a blog a year ago last week and from then until the day EIlish died - exactly 4 months - there is at least one entry for each day.  All I know is that I can function normally, for the most part, but the pain I feel at times is so acute and worse than it's ever been. I have been thinking about this a lot and I've come to the conclusion that it will never get better or easier to be without Eilish, but that I am getting used to it and it is part of me and my new life. So although I still have bad days/ weeks, I feel it's more predictable. There are still things, situations that catch me off guard and hit me hard, but for the most part I know how it goes. I 'get on with' life or, more accurately, it carries me on, then an anniversary comes or a particular memory hits and I have a few bad days - it's a release to let it all out - and then I go back to life for a few weeks. I seem to be able to hold it together until another anniversary or memory strikes again. There are times when I get longer in between these. Then there are times when I feel guilty about laughing and smiling - and all I want to say to people is that I may be laughing but there's still a part of my heart missing, my laughter and joy is not at the same level it was before but I do still find happiness around - especially with our 2 boys (aged 4 and 2). There are times when mindless chit chat is fine but when I'm having hard days then I can't be bothered with it and everything seems trivial so on those days it's easier not to be in social situations.

It's now been 8 months since Eilish died and in many senses they have passed in a flash. I am dreading when it becomes 9 months because then it will then only be a matter of days until she has been gone for longer than she lived and that fills me with such sadness, that her life seems so fleeting. However, she will never be forgotten. I find it difficult to think about happy times with her as all I can think about was the pain and suffering she went through and how awful it was to see her struggle and know she wasn't going to win her battle but she was such a happy wee thing with a cheeky wee smile. She loved music and singing and she loved her big brothers.

So I'm here, living this new life - a life I haven't chosen - and trying to make the best of it. I am thankful for my husband and my 2 gorgeous boys and the for the life we have. I am making plans to go back to work. Our eldest boy will start school in August and our youngest son will go start Nursery in August too. I am not moving on but I am moving forward. Part of me will always be in the past with Eilish, my heart will always have a piece missing and our life will always have an Eilish-shaped hole in it.  I will always be Eilish's Mummy and proud to be. x

(written 16th May 2015)

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